I really tried to get as much sleep as possible, so I did not see "the apprentice". The nights and days are a round of constant interruption. I will try again tonight to catch up on some.sleep
Some of my symptoms are cyclic, for example the burning hands and feet peak between 11 and 4, and then subside back to painful but tolerable.The diarrhoea is making a comeback sadly. It too seems to peak in the early evening. I did have a ten hour break between 5am and 5pm. I hope I get the same kind of break overnight.
Rose came to visit again, and we actually managed to do some crossword clues.
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Thursday 30 June 2011
Wednesday 29 June 2011
Blogger or I made a mistake
I just submitted today's post, and for some reason yesterday's seemed to have disappeared, yet I know it submitted OK because I got comments.
Apologies if you subscribe and got "T+5" twice.
Apologies if you subscribe and got "T+5" twice.
T+6: I need to sleep!
The diarrhoea and the number of IV drugs are still disrupting my sleep patterns, but I hope to get some good chunks tonight be because ...
The loperamide is quite effective against diarrhoea. I can last 4 or 5 hours using it. I am still taking the Buscopan to stop the cramps, so it looks like these drugs will enable me to make it through the next week or so until the cells engraft.
The oedema worsens. I have about 6kg of retained water in me. It has badly affected then palms of my hands and the soles of me feet, which are also affected directly by the cyclosporine (the immuno-suppressant). My hands and feet feel like they are being permanently scalded in hot water! They are going to give me a special kind of neuro pain killer that only affects nerves, but it takes 3 days to build up. In the meantime, I cool them down with wet paper towels!
Rose came to visit, and my improved wellbeing enabled us to attempt a crossword, but without much success I'm sorry to say.
This period of my treatment is like crossing a wide river in a raft ... at night. Then there is the climb at the other side!
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The loperamide is quite effective against diarrhoea. I can last 4 or 5 hours using it. I am still taking the Buscopan to stop the cramps, so it looks like these drugs will enable me to make it through the next week or so until the cells engraft.
The oedema worsens. I have about 6kg of retained water in me. It has badly affected then palms of my hands and the soles of me feet, which are also affected directly by the cyclosporine (the immuno-suppressant). My hands and feet feel like they are being permanently scalded in hot water! They are going to give me a special kind of neuro pain killer that only affects nerves, but it takes 3 days to build up. In the meantime, I cool them down with wet paper towels!
Rose came to visit, and my improved wellbeing enabled us to attempt a crossword, but without much success I'm sorry to say.
This period of my treatment is like crossing a wide river in a raft ... at night. Then there is the climb at the other side!
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Tuesday 28 June 2011
T+5: Oedema
I guess I have settled into a routine, and although it is not pleasant it is bearable. We humans are nothing if not adaptable!
Sleep deprivation is a key element. I have not had more then an hour's contiguous sleep, and I am unlikely to do better much before the donor cells engraft, which is at least another 7 days.
On the plus side, my stool samples came back negative for any bugs, including C-DIFF, so they have at last given me some loperamide (Immodium) to slow down the diarrhoea. Even so, there are sufficient procedures to keep me interrupted most of the night.
As the title suggests, I am still retaining fluid, pretty much evenly distributed, and my hands and feet have become very "sensitive" (it hurts to put my hands in hot water). My food regime is down to just yoghurt and ice cream, because my mouth has become very dry and the nausea puts me off eating anyway.
Rose came to visit, but I was again not such good company. It is nice to have her in the room to doze off with! The other day she brought her laptop so we could sync some photos. These are some of our early pre-digital photos that we got digitised by a bureau. It is not outrageously expensive, and it is so nice to see the old pictures.
This is a picture of the Vieux Bassin in Honfleur (France), with Rose very decorously in the foreground taken in 2000.
Honfleur is a beautiful town, with many good restaurants. It is funny to think that we would have paid for this trip in French Francs!
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Sleep deprivation is a key element. I have not had more then an hour's contiguous sleep, and I am unlikely to do better much before the donor cells engraft, which is at least another 7 days.
On the plus side, my stool samples came back negative for any bugs, including C-DIFF, so they have at last given me some loperamide (Immodium) to slow down the diarrhoea. Even so, there are sufficient procedures to keep me interrupted most of the night.
As the title suggests, I am still retaining fluid, pretty much evenly distributed, and my hands and feet have become very "sensitive" (it hurts to put my hands in hot water). My food regime is down to just yoghurt and ice cream, because my mouth has become very dry and the nausea puts me off eating anyway.
Rose came to visit, but I was again not such good company. It is nice to have her in the room to doze off with! The other day she brought her laptop so we could sync some photos. These are some of our early pre-digital photos that we got digitised by a bureau. It is not outrageously expensive, and it is so nice to see the old pictures.
This is a picture of the Vieux Bassin in Honfleur (France), with Rose very decorously in the foreground taken in 2000.
Honfleur is a beautiful town, with many good restaurants. It is funny to think that we would have paid for this trip in French Francs!
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Monday 27 June 2011
T+4: Getting the drugs right
I had a terrible night. The diarrhoea continued unabated, and the attendant stomach cramps were bad. Furthermore, my temperature has spiked - I have an infection. They took blood cultures right away, and started me on Meropenem. They also booked a chest Xray just to check it is all clear.
Today my temperature continues to be above 38, and I have had a few rigor attacks (shivering). They are giving me almost all my meds IV, and one of the lumens in my PICChas blocked. Fortunately they have a chemical to unblock it, and it worked.
The rigor attacks are bad, because they exacerbate the diarrhoea! Talking of which, it has changed a bit, I hope for the better. The frequency may have dropped to 2 hours. I am cautiously optimistic.
However, having said all this, when the drugs are working I can get comfortable for a few hours. The chest Xray was clear.
Rose came again to visit, but all I did was sleep really. It is still a comfort to haver in the room with me for a few hours.
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Today my temperature continues to be above 38, and I have had a few rigor attacks (shivering). They are giving me almost all my meds IV, and one of the lumens in my PICChas blocked. Fortunately they have a chemical to unblock it, and it worked.
The rigor attacks are bad, because they exacerbate the diarrhoea! Talking of which, it has changed a bit, I hope for the better. The frequency may have dropped to 2 hours. I am cautiously optimistic.
However, having said all this, when the drugs are working I can get comfortable for a few hours. The chest Xray was clear.
Rose came again to visit, but all I did was sleep really. It is still a comfort to haver in the room with me for a few hours.
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Sunday 26 June 2011
T+3: It continues
Yesterday evening I did feel a little better, but then vomited my dinner. I passes a fitful night with the diarrhoea and cramps, but amazingly managed to get some sleep.
This morning things are, if anything, worse. This is definitely the worse diarrhoea I ever had, including the previous episodes documented in this blog. The cramps are a constant companion. The drug Buscopan does help with the cramps, but it does not last 6 hours.
I am retaining fluid, and not passing enough through my kidneys, so they have put me on a permanent fluid drip. Of course, it probably means I will retain more fluid, bit at least it gives me a chance of exercising my kidneys.
I just tried to take some codeine orally and promptly vomited, so I am also getting some IV cyclizine which is an anti-sickness drug. They are also going to switch more of my oral medication to IV. Things are a bit out of kilter right now!
Rose came to visit, but I am not much company. Apart from Rose, I do not think I would like to have any visitors for a few days - best wait until I am a bit better.
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This morning things are, if anything, worse. This is definitely the worse diarrhoea I ever had, including the previous episodes documented in this blog. The cramps are a constant companion. The drug Buscopan does help with the cramps, but it does not last 6 hours.
I am retaining fluid, and not passing enough through my kidneys, so they have put me on a permanent fluid drip. Of course, it probably means I will retain more fluid, bit at least it gives me a chance of exercising my kidneys.
I just tried to take some codeine orally and promptly vomited, so I am also getting some IV cyclizine which is an anti-sickness drug. They are also going to switch more of my oral medication to IV. Things are a bit out of kilter right now!
Rose came to visit, but I am not much company. Apart from Rose, I do not think I would like to have any visitors for a few days - best wait until I am a bit better.
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Saturday 25 June 2011
T+2: Feeling terrible
The effects of the transplant and the cyclosporine are hammering home. I have very bad diarrhoea, with bad abdominal cramps, and I have a more ore less permanent headache. On top of this my body is retaining fluid.
On the plus side, my mouth is still in reasonable shape, although they tell me it will get worse. I am starting to get a bit nauseous too, but managed most of my breakfast. Lunch was less successful.
They gave me Buscopan to help with the stomach cramps, and codeine for the headaches, and in the afternoon I felt a little better, and got some sleep.
The doctor did not seem too concerned with my symptoms, and said I was doing OK for this stage of the treatment.
One day at at a time eh!
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On the plus side, my mouth is still in reasonable shape, although they tell me it will get worse. I am starting to get a bit nauseous too, but managed most of my breakfast. Lunch was less successful.
They gave me Buscopan to help with the stomach cramps, and codeine for the headaches, and in the afternoon I felt a little better, and got some sleep.
The doctor did not seem too concerned with my symptoms, and said I was doing OK for this stage of the treatment.
One day at at a time eh!
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Friday 24 June 2011
T+1: Diarrhoea!
I slept badly last night, and today I have started suffering from diarrhoea, and general abdominal pain. It is entirely expected, and the doctors did not seem concerned.
Rose came to visit, but she also slept badly so we were both a bit tired. I was still hooked up to the cyclosporine when she arrived. She left after lunch at about 2pm and I tried to have a nap without much success.
The tennis is a constant companion; later on Murray is playing, but next up is Nadal v Muller.
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Rose came to visit, but she also slept badly so we were both a bit tired. I was still hooked up to the cyclosporine when she arrived. She left after lunch at about 2pm and I tried to have a nap without much success.
The tennis is a constant companion; later on Murray is playing, but next up is Nadal v Muller.
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Thursday 23 June 2011
Transplant day
I slept OK, and at about 6:30am they gave me cyclosporine - a four hour IV drip. I was hoping to pop over and see Harry donating his cells, but my blood counts have dropped really low and I am again neutropenic, so I am advised to stay in my room.
Harry came over after his donation, but he had to go back to give blood for a post check, and also to find out if they got enough cells or if he needs to come back tomorrow. The treatment was not too bad, but he did get a cold sweat which they treated with potassium.
Harry came back later, and saw his cells being infused Into me! It is quite bizarre in some senses. I am still hooked up to them now, it will take about 2 hours to finish. The nurse put a cannula in especially for the cells, because they are not pumped, just fed by gravity. If they use the PICC line it would take far too long because the PICC line is much more sluggish than a cannula. They got enough cells this time, so Harry does not have to come back tomorrow, which is great.
This is quite a monumental day really. It is the coming few weeks and then the following 3 months that are the tough times. I am glad that Harry managed to donate the cells without too much discomfort, and I am very grateful that he has done so. It should take 10 to 14 days for Harry's cells to engraft in my bone marrow. Before that I have the chance of infection, and after that graft versus host disease.
I hope that my taste will not be altered too much by the chemo I have just had, but time will tell.
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Harry came over after his donation, but he had to go back to give blood for a post check, and also to find out if they got enough cells or if he needs to come back tomorrow. The treatment was not too bad, but he did get a cold sweat which they treated with potassium.
Harry came back later, and saw his cells being infused Into me! It is quite bizarre in some senses. I am still hooked up to them now, it will take about 2 hours to finish. The nurse put a cannula in especially for the cells, because they are not pumped, just fed by gravity. If they use the PICC line it would take far too long because the PICC line is much more sluggish than a cannula. They got enough cells this time, so Harry does not have to come back tomorrow, which is great.
This is quite a monumental day really. It is the coming few weeks and then the following 3 months that are the tough times. I am glad that Harry managed to donate the cells without too much discomfort, and I am very grateful that he has done so. It should take 10 to 14 days for Harry's cells to engraft in my bone marrow. Before that I have the chance of infection, and after that graft versus host disease.
I hope that my taste will not be altered too much by the chemo I have just had, but time will tell.
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Wednesday 22 June 2011
The longest day
T minus 1
I know it was actually the longest day yesterday, but it will be a long day for me today! Last night we had pizza and I enjoyed it.
We checked out of the hotel and came early to Ambicare. I got pre-meds for the campath. First, IV steroid methylpredmisolone, then oral paracetamol, and then IV Piriton.
I have now been connected to the campath for 4 hours, with only a sore throat as a reaction, so things are going quite well. They started the cyclosprorin a while back, so both of these are going in at the same time.
Rose and I are watching the tennis and doing crosswords and puzzles at the same time.
At about 3:30 I started rasping when breathing, so they gave me a nebulizer of salbutamol and it eased my throat. So far it is the only reaction I have had.
The treatments all finished by 6:15, and Rose left at 6:30, but I had to wait over an hour For a porter to take me over.
I am in T16/40, I.e. 16th floor, room 40. It is very small.
All in all, I should be thankful that I reacted so little to the campath. The room has a little portable TV with no remote, but it saves me buying the pay TV.
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I know it was actually the longest day yesterday, but it will be a long day for me today! Last night we had pizza and I enjoyed it.
We checked out of the hotel and came early to Ambicare. I got pre-meds for the campath. First, IV steroid methylpredmisolone, then oral paracetamol, and then IV Piriton.
I have now been connected to the campath for 4 hours, with only a sore throat as a reaction, so things are going quite well. They started the cyclosprorin a while back, so both of these are going in at the same time.
Rose and I are watching the tennis and doing crosswords and puzzles at the same time.
At about 3:30 I started rasping when breathing, so they gave me a nebulizer of salbutamol and it eased my throat. So far it is the only reaction I have had.
The treatments all finished by 6:15, and Rose left at 6:30, but I had to wait over an hour For a porter to take me over.
I am in T16/40, I.e. 16th floor, room 40. It is very small.
All in all, I should be thankful that I reacted so little to the campath. The room has a little portable TV with no remote, but it saves me buying the pay TV.
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Tuesday 21 June 2011
Mephalan
Today I had my dose of methalan. The primary side effect is a sore mouth, so they give you an orange ice lolly to suck whilst then infusion is running; I had two! It is a long time since I last had an ice lolly. We used to make orange squash ice cubes as kids (I'm sure everyone does). Now I have some soreness on the inside of my upper lip, and it is not too bad. Mephalan also causes nausea, but so far so good ( the anti-sickness drugs are working).
Last night did not go as planned. I was to get a taxi to Hyde Park Corner, but it started raining in the afternoon, and at 6pm in rainy London you cannot get a cab for love nor money. So, instead Patrick and Dee came to me and we ate in Fitzrovia in an Italian fish restaurant. The meal was quite good, and even better Patrick paid! We had a great time, it was especially nice to see Dee, who I have not seen for some time.
Rose has come to stay the night, and see me through tomorrow; I have the campath treatment, and then I am admitted to hospital. So tonight really is the last night before the serious treatment begins.
Thank you to everyone who has wished me well, I really appreciate it.
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Last night did not go as planned. I was to get a taxi to Hyde Park Corner, but it started raining in the afternoon, and at 6pm in rainy London you cannot get a cab for love nor money. So, instead Patrick and Dee came to me and we ate in Fitzrovia in an Italian fish restaurant. The meal was quite good, and even better Patrick paid! We had a great time, it was especially nice to see Dee, who I have not seen for some time.
Rose has come to stay the night, and see me through tomorrow; I have the campath treatment, and then I am admitted to hospital. So tonight really is the last night before the serious treatment begins.
Thank you to everyone who has wished me well, I really appreciate it.
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Monday 20 June 2011
Preparing for transplant
T minus 3
Today was another "easy" day in Ambicare, and I am now back in my hotel room watching The tennis on centre court. Nadal cruised through, I very much suspect he will be there in two weeks time, but we'll see ...
This morning I rang Harry to see how his first injection of stem cell stimulant went, and it was a bit of a nightmare. It was due yesterday, and was scheduled to be delivered by the district nurse at Harry's home (the local GP practice being closed on Sunday). The nurse arrived, but was very unsure of herself. "The dose is very large" she told Harry. She rang her colleague who also came round. They read through the pharmacy notes for the drug, which state that it should only be administered when an oncologist is present, so they refused to do it. They told Harry to go to the walk-in medical centre. The nearest centre is in Hounslow.
But things then got worse; the doctor they saw also refused to do it. Harry got him to ring UCH, which did clarify things a bit, but because the doctor had shown reluctance to administer the shot, Harry was not keen for him to do it. Then the doctor accused him of doubting his professional integrity! Finally, Harry came up to UCH, to T16, and it took 5 minutes to administer! By coincidence, the registrar on call was the same one who wrote the instructions for administering the drug, and she admitted she could have put more explanation. What a kerfuffle! And all this on father's day! I most deeply thank Harry and his family for their forbearance and persistence.
Today Harry went to his group GP practice to get the next shot, and the doctor he saw had initially the same reaction as the district nurses! But Harry protested that full instructions were sent to the practice. Grudgingly the doctor looked on his computer, and sure enough sufficient instructions to administer the injection were there on file! The second shot was duly administered, and hopefully Harry will be OK for the rest of the week's ministrations.
For myself, I still feel well with no nausea and good taste (impeccable taste I might say). Tomorrow I get a stronger drug called mephalan, that may cause nausea, and then on Wednesday the really nasty drug campath, after which I will be admitted. Campath causes one's immune system to attack itself, and rashes, shivers and so on are very common reactions. I get Piriton and hydrocortisone to counteract it.
This evening I am having dinner with Patrick at a swanky London restaurant inside the Intercontinental hotel at Hyde Park Corner. I will take a cab.
- Posted using BlogPress from my iPad
Today was another "easy" day in Ambicare, and I am now back in my hotel room watching The tennis on centre court. Nadal cruised through, I very much suspect he will be there in two weeks time, but we'll see ...
This morning I rang Harry to see how his first injection of stem cell stimulant went, and it was a bit of a nightmare. It was due yesterday, and was scheduled to be delivered by the district nurse at Harry's home (the local GP practice being closed on Sunday). The nurse arrived, but was very unsure of herself. "The dose is very large" she told Harry. She rang her colleague who also came round. They read through the pharmacy notes for the drug, which state that it should only be administered when an oncologist is present, so they refused to do it. They told Harry to go to the walk-in medical centre. The nearest centre is in Hounslow.
But things then got worse; the doctor they saw also refused to do it. Harry got him to ring UCH, which did clarify things a bit, but because the doctor had shown reluctance to administer the shot, Harry was not keen for him to do it. Then the doctor accused him of doubting his professional integrity! Finally, Harry came up to UCH, to T16, and it took 5 minutes to administer! By coincidence, the registrar on call was the same one who wrote the instructions for administering the drug, and she admitted she could have put more explanation. What a kerfuffle! And all this on father's day! I most deeply thank Harry and his family for their forbearance and persistence.
Today Harry went to his group GP practice to get the next shot, and the doctor he saw had initially the same reaction as the district nurses! But Harry protested that full instructions were sent to the practice. Grudgingly the doctor looked on his computer, and sure enough sufficient instructions to administer the injection were there on file! The second shot was duly administered, and hopefully Harry will be OK for the rest of the week's ministrations.
For myself, I still feel well with no nausea and good taste (impeccable taste I might say). Tomorrow I get a stronger drug called mephalan, that may cause nausea, and then on Wednesday the really nasty drug campath, after which I will be admitted. Campath causes one's immune system to attack itself, and rashes, shivers and so on are very common reactions. I get Piriton and hydrocortisone to counteract it.
This evening I am having dinner with Patrick at a swanky London restaurant inside the Intercontinental hotel at Hyde Park Corner. I will take a cab.
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Sunday 19 June 2011
Magnesium
I managed to stay awake until11pm watching the golf, saw Lee Westwood get home but missed Rory's back nine. He did well enough without me!
My blood results from yesterday showed a drop in my magnesium, caused by the chemo of course. When the doctor came to see me in Ambicare, she asked "have you been getting any muscle cramp?", and it so happens I have! I have been getting cramp in my calves. They do know their stuff - she said it was because of the magnesium deficiency, so after the chemo I had a bag of fluid with magnesium.
Rose came in the afternoon and we went to the Welcome Foundation to see an exhibition entitled "Dirt". It was OK, but not fantastic. The most interesting thing for me was that at one stage they made bricks using the ashes of dead people! There is a collection of some of these bricks and a list of the people who went into them; somehow this is quite thought provoking. We also looked at the permanent exhibition about medicine they have their. One could spend a whole day there if in the mood, watching the videos and listening to the recordings. We wizzed through!
Rose picked a restaurant for us to eat at, called the "Italian Kitchen". It is down on New Oxford Street, and serves simple, fresh Italian food. We both had the sea bass fillet for main and it was very good, washed down with a bottle of San Giovese (young, fruity and only 12% which is great). Of course it was a 50% Tastecard deal, but quite reasonably priced. The service was good, and after the meal the waiter asked Rose if she owned a restaurant! He explained that he asked because she seemed to know a lot about food and wine. We explained that we just eat and drink a lot. It was very amusing and very flattering for Rose.
Now we are back in the hotel, hoping to stay awake to see Rory take the US open.
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My blood results from yesterday showed a drop in my magnesium, caused by the chemo of course. When the doctor came to see me in Ambicare, she asked "have you been getting any muscle cramp?", and it so happens I have! I have been getting cramp in my calves. They do know their stuff - she said it was because of the magnesium deficiency, so after the chemo I had a bag of fluid with magnesium.
Rose came in the afternoon and we went to the Welcome Foundation to see an exhibition entitled "Dirt". It was OK, but not fantastic. The most interesting thing for me was that at one stage they made bricks using the ashes of dead people! There is a collection of some of these bricks and a list of the people who went into them; somehow this is quite thought provoking. We also looked at the permanent exhibition about medicine they have their. One could spend a whole day there if in the mood, watching the videos and listening to the recordings. We wizzed through!
Rose picked a restaurant for us to eat at, called the "Italian Kitchen". It is down on New Oxford Street, and serves simple, fresh Italian food. We both had the sea bass fillet for main and it was very good, washed down with a bottle of San Giovese (young, fruity and only 12% which is great). Of course it was a 50% Tastecard deal, but quite reasonably priced. The service was good, and after the meal the waiter asked Rose if she owned a restaurant! He explained that he asked because she seemed to know a lot about food and wine. We explained that we just eat and drink a lot. It was very amusing and very flattering for Rose.
Now we are back in the hotel, hoping to stay awake to see Rory take the US open.
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Saturday 18 June 2011
Boring is good
T minus 5
Rose and I dined well last night, and slept pretty well also (I watched the golf until quite late).
This morning Rose came with me to Ambicare for a couple of hours, which was really nice. We saw the weekend doctor, who I have met previously (and who did an intrathecal on me rather well as I recall), and she was very upbeat about the transplant process. "Oh, it's not too bad. You shouldn't get an infection really" she said. This is in stark contrast to the previous advice we were given, and I don't really believe it, but it was nice to hear. It is of course a dream of mine to get through the three weeks or so post transplant without an infection!
I feel well, and have a reasonable appetite; I think I might be able to gain some more weight in this "easy" period before the transplant. The rest of the day has been a bit slow and boring, but better that than stress and excitement!
To those of you who fancy attempting the "Cambridge Cryptogram", please email your answer directly to me. I will tell you if you got it right. First one to solve it will of course get suitable recognition in these pages (but no other prize).
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Rose and I dined well last night, and slept pretty well also (I watched the golf until quite late).
This morning Rose came with me to Ambicare for a couple of hours, which was really nice. We saw the weekend doctor, who I have met previously (and who did an intrathecal on me rather well as I recall), and she was very upbeat about the transplant process. "Oh, it's not too bad. You shouldn't get an infection really" she said. This is in stark contrast to the previous advice we were given, and I don't really believe it, but it was nice to hear. It is of course a dream of mine to get through the three weeks or so post transplant without an infection!
I feel well, and have a reasonable appetite; I think I might be able to gain some more weight in this "easy" period before the transplant. The rest of the day has been a bit slow and boring, but better that than stress and excitement!
To those of you who fancy attempting the "Cambridge Cryptogram", please email your answer directly to me. I will tell you if you got it right. First one to solve it will of course get suitable recognition in these pages (but no other prize).
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Friday 17 June 2011
Back to normal in Ambicare
T minus 6
Thank goodness today was a much easier day than yesterday! I spent the morning relaxing in Ambicare - I have my own room rather than sitting in the open area to minimise my contact with potentially sick people. I was able to go out and get some lunch before the chemo was given. Another dose of fludarabine; it only takes 40 minutes. I was back in the hotel by 3pm.
I am still feeling well, so I guess I am tolerating the chemo OK. I have an alarm installed in my hotel room in case of nighttime emergencies; let us hope I don't need it.
I spent the afternoon watching the US open - well played Rory! Rose has just arrived and we are going to eat at a slightly upscale Italian soon (with the Tastecard of course).
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Thank goodness today was a much easier day than yesterday! I spent the morning relaxing in Ambicare - I have my own room rather than sitting in the open area to minimise my contact with potentially sick people. I was able to go out and get some lunch before the chemo was given. Another dose of fludarabine; it only takes 40 minutes. I was back in the hotel by 3pm.
I am still feeling well, so I guess I am tolerating the chemo OK. I have an alarm installed in my hotel room in case of nighttime emergencies; let us hope I don't need it.
I spent the afternoon watching the US open - well played Rory! Rose has just arrived and we are going to eat at a slightly upscale Italian soon (with the Tastecard of course).
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Cambridge Cryptogram
This is the IQ puzzle that I referred to in my post "The last supper". It is copied verbatim from the book of IQ puzzles that Ray gave me, including the somewhat curious double,value of "N" in the example. I think it is just a proofing error, but who knows?
Cambridge Cryptogram
Each letter has a numerical value attached to it, and the total of all the letters equals the professor's value. For example, if the letters N,E, W, T, O and N had values of 12, 7, 9, 14, 21 and 5, respectively, then Isaac Newton would have a numermical value of 68.
Your objective is to figure our Hawking's numerical value.
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Cambridge Cryptogram
Each letter has a numerical value attached to it, and the total of all the letters equals the professor's value. For example, if the letters N,E, W, T, O and N had values of 12, 7, 9, 14, 21 and 5, respectively, then Isaac Newton would have a numermical value of 68.
Your objective is to figure our Hawking's numerical value.
BARROW 71 TURTON 80 NEWTON 70 AIRY 46 WHISTON 104 BABBAGE 84 SAUNDERSON 129 KING 45 COLSON 51 LARMOR 58 WARING 92 DIRAC 52 MILNER 58 LIGHTHILL 130 WOODHOUSE 108 HAWKING ?
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Thursday 16 June 2011
A scare in Ambicare
T minus 7
Today is supposed to be my first treatment day. I arrive in Ambicare slightly late at 9:45 due to a phone call with Patrick, who has interesting sailing and work news. Bloods are taken, and my haemoglobin has gone down almost a gram to 7.2. Just after 11 I am given a unit of blood. The doctor arrives, and says he is concerned about the drop in haemoglobin, and wants to do a bone marrow biopsy to confirm that I am still in remission. Although I had a biopsy confirming remission only two weeks ago, he said it is possible I have relapsed.
I call Rose at home and leave a message as she is not there. Whilst waiting for the biopsy I have an ECG, now standard practice for transplant patients since someone had heart problems!
I have had four previous bone marrow biopsies. The third one was particularly painful and protracted; it took the doctor 10 minutes of pushing to get into the bone. She told me to be sedated for all future ones, as they only get tougher. For the fourth one I was sedated. Today, because I had a big breakfast the doctor said we would have to wait too long for me to have sedation, and he wants the results today, so we can begin the conditioning chemo. So, he insists that we do the biopsy under local. I acquiesce; what choice do I have. After one and half hours of waiting, thinking about the painful procedure to come, and worrying that I have relapsed, he performs the biopsy. It was the easiest, quickest and least painful since the first one back in January! It reminded me of Catch 22, and the bombing run to Bologna; "it was a milk run".
Now I will get another unit of blood, whilst waiting for the results of the bone marrow biopsy. If all is OK I will get the chemo late this afternoon; it is only a half hour infusion.
The results of the bone marrow biopsy arrive at about 4pm. It is all clear, and we can proceed with the transplant. I am now waiting for the first dose of fludarabine to be administered, watching the US open golf on my Sky mobile iPad app.
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Today is supposed to be my first treatment day. I arrive in Ambicare slightly late at 9:45 due to a phone call with Patrick, who has interesting sailing and work news. Bloods are taken, and my haemoglobin has gone down almost a gram to 7.2. Just after 11 I am given a unit of blood. The doctor arrives, and says he is concerned about the drop in haemoglobin, and wants to do a bone marrow biopsy to confirm that I am still in remission. Although I had a biopsy confirming remission only two weeks ago, he said it is possible I have relapsed.
I call Rose at home and leave a message as she is not there. Whilst waiting for the biopsy I have an ECG, now standard practice for transplant patients since someone had heart problems!
I have had four previous bone marrow biopsies. The third one was particularly painful and protracted; it took the doctor 10 minutes of pushing to get into the bone. She told me to be sedated for all future ones, as they only get tougher. For the fourth one I was sedated. Today, because I had a big breakfast the doctor said we would have to wait too long for me to have sedation, and he wants the results today, so we can begin the conditioning chemo. So, he insists that we do the biopsy under local. I acquiesce; what choice do I have. After one and half hours of waiting, thinking about the painful procedure to come, and worrying that I have relapsed, he performs the biopsy. It was the easiest, quickest and least painful since the first one back in January! It reminded me of Catch 22, and the bombing run to Bologna; "it was a milk run".
Now I will get another unit of blood, whilst waiting for the results of the bone marrow biopsy. If all is OK I will get the chemo late this afternoon; it is only a half hour infusion.
The results of the bone marrow biopsy arrive at about 4pm. It is all clear, and we can proceed with the transplant. I am now waiting for the first dose of fludarabine to be administered, watching the US open golf on my Sky mobile iPad app.
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About the transplant
After talking with the doctor yesterday, I thought I would share some of the ideas behind the transplant ...
I am having a "reduced intensity" transplant. In a "normal" transplant, the host bone marrow is totally wiped out using very strong chemo drugs and full body radio therapy, before the donor cells are injected. However, at my age, the risks of doing this to me outweigh the benefits. Instead, I will have a much gentler chemo regime before the donor cells are injected, combined with immune suppressant treatment. The immune suppressants work both on my residual immune system, to stop it attacking the donor cells, and on the donor cells immune system to suppress it attacking my body. The latter if called "graft versus host" disease (GVHD), and attacks mainly the skin, the kidneys and the liver. However, the real "trick" with reduced intensity transplant is to get the new immune system to attack the host's leukaemia cells, known as "graft versus leukaemia effect". For a while I will have two immune systems; it is intended the stronger donor system will kill off the weaker host system. One of the ways the transplant can fail is if this does not happen, however even in this case they can take some mature White cells from Harry and inject them into me to give the new immune system a boost.
After the initial transplant, and the time in hospital afterwards until the donor cells embed in the bone marrow, the next 100 days are key. It is a balancing act between graft versus host disease and graft versus leukaemia effect, effectively training the new immune system. The immune suppressant drug levels are varied based on weekly or biweekly blood samples. The main drug is called cyclosporine; a drug discovered 40 years ago, and still nothing better has been discovered! It is a difficult drug to use, affecting different people differently, and getting the dose right is apparently quite tough. With this drug the new immune system can be trained, literally, to do the right thing. If I get too much GVHD they increase the cyclosporine dose, which suppresses the immune system. Then the dose is gradually lessened again and the immune system knows not to attack me again, otherwise it gets more cyclosporine!
Note that it is the anti viral part of the immune system that is suppressed, whereas until now I have been concerned about bacterial infection, post transplant it is viruses that I need to worry about.
During this 100 days post transplant it is likely that I will be readmitted to hospital for one reason or another, for example a viral infection or a flare up of GVHD. One very common cause is an attack of cytomegalovirus or CMV. CMV affects about 60% of the population, lying dormant and causing no issues, until your immune system is suppressed. Luckily, both Harry and I are CMV negative, which is a real bonus post transplant. I will attend a weekly clinic, and the hospital will provide transport for me to and from the clinic.
Finally, one strange effect of the original treatment and transplant, is that the "memory" of the donor immune system is erased. We all know about this but so take it for granted - the immune system memory knows about viruses it has killed before and enables it to kill new occurrences. This is why we are vaccinated as kids. Well, my new immune system will have no memory, so after it has properly bedded in, and I am off the cyclosporine, I will be vaccinated against all the common diseases like measles, mumps and so on. And of course, as I have blogged before, my blood type will change to be the same as my brother's. Furthermore, my blood will have his DNA! One of the ways they tell if the graft has taken is to take the DNA of my blood after three months. They hope it will be all Harry's, and none of mine.
I think the whole process and it's various outcomes are fascinating.
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I am having a "reduced intensity" transplant. In a "normal" transplant, the host bone marrow is totally wiped out using very strong chemo drugs and full body radio therapy, before the donor cells are injected. However, at my age, the risks of doing this to me outweigh the benefits. Instead, I will have a much gentler chemo regime before the donor cells are injected, combined with immune suppressant treatment. The immune suppressants work both on my residual immune system, to stop it attacking the donor cells, and on the donor cells immune system to suppress it attacking my body. The latter if called "graft versus host" disease (GVHD), and attacks mainly the skin, the kidneys and the liver. However, the real "trick" with reduced intensity transplant is to get the new immune system to attack the host's leukaemia cells, known as "graft versus leukaemia effect". For a while I will have two immune systems; it is intended the stronger donor system will kill off the weaker host system. One of the ways the transplant can fail is if this does not happen, however even in this case they can take some mature White cells from Harry and inject them into me to give the new immune system a boost.
After the initial transplant, and the time in hospital afterwards until the donor cells embed in the bone marrow, the next 100 days are key. It is a balancing act between graft versus host disease and graft versus leukaemia effect, effectively training the new immune system. The immune suppressant drug levels are varied based on weekly or biweekly blood samples. The main drug is called cyclosporine; a drug discovered 40 years ago, and still nothing better has been discovered! It is a difficult drug to use, affecting different people differently, and getting the dose right is apparently quite tough. With this drug the new immune system can be trained, literally, to do the right thing. If I get too much GVHD they increase the cyclosporine dose, which suppresses the immune system. Then the dose is gradually lessened again and the immune system knows not to attack me again, otherwise it gets more cyclosporine!
Note that it is the anti viral part of the immune system that is suppressed, whereas until now I have been concerned about bacterial infection, post transplant it is viruses that I need to worry about.
During this 100 days post transplant it is likely that I will be readmitted to hospital for one reason or another, for example a viral infection or a flare up of GVHD. One very common cause is an attack of cytomegalovirus or CMV. CMV affects about 60% of the population, lying dormant and causing no issues, until your immune system is suppressed. Luckily, both Harry and I are CMV negative, which is a real bonus post transplant. I will attend a weekly clinic, and the hospital will provide transport for me to and from the clinic.
Finally, one strange effect of the original treatment and transplant, is that the "memory" of the donor immune system is erased. We all know about this but so take it for granted - the immune system memory knows about viruses it has killed before and enables it to kill new occurrences. This is why we are vaccinated as kids. Well, my new immune system will have no memory, so after it has properly bedded in, and I am off the cyclosporine, I will be vaccinated against all the common diseases like measles, mumps and so on. And of course, as I have blogged before, my blood type will change to be the same as my brother's. Furthermore, my blood will have his DNA! One of the ways they tell if the graft has taken is to take the DNA of my blood after three months. They hope it will be all Harry's, and none of mine.
I think the whole process and it's various outcomes are fascinating.
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Wednesday 15 June 2011
The final countdown
T minus 8
I am writing this post in my hotel room; I have checked back into Ambicare for hopefully the last time.
I have had another PICC line inserted. It was slightly more troublesome than the last few times, but it is all OK after the chest Xray confirmation. The only other thing we did was meet my new registrar. The transplant team is completely different; I have new doctors. This new doctor was very good I thought, explaining the process again with clarity. I signed the consent form where one of the risks listed is "death"! The conditioning chemo starts tomorrow. The first few days are apparently quite easy ...
Rose has been with me all day, and will stay the night. We need to decide where to have dinner. I forgot to mention yesterday that Rose played golf, and came 4th in her competition; just off the podium but still a good result, so well played Rose!
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I am writing this post in my hotel room; I have checked back into Ambicare for hopefully the last time.
I have had another PICC line inserted. It was slightly more troublesome than the last few times, but it is all OK after the chest Xray confirmation. The only other thing we did was meet my new registrar. The transplant team is completely different; I have new doctors. This new doctor was very good I thought, explaining the process again with clarity. I signed the consent form where one of the risks listed is "death"! The conditioning chemo starts tomorrow. The first few days are apparently quite easy ...
Rose has been with me all day, and will stay the night. We need to decide where to have dinner. I forgot to mention yesterday that Rose played golf, and came 4th in her competition; just off the podium but still a good result, so well played Rose!
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Tuesday 14 June 2011
The last supper
... at home for a while!
We have opened a bottle of 1998 Vieux Telegraphe, a Chateauneuf du Pape wine from the Rhone region of France. It is another lovely, rich, powerful wine; as Rose put it, "a wine to drink and put the world to rights to". We will dine outside - it is a very pleasant English Spring evening.
Tomorrow I will check in to Ambicare, and have a new PICC line inserted. The chemo starts on Thursday. I will spend 6 days in Ambicare, and then be admitted to hospital one day before the transplant. Meanwhile, my brother Harry starts his course of injections to stimulate his stem cell growth on Sunday; one per day until next Thursday, the day of the transplant. Then he comes to UCH for the stem cell harvest, and the cells will be given to me as soon as they have them. I very much hope we will see each other on the day; if I am well enough I can visit him whilst the cells are being harvested, and after he has finished he can come and see me in hospital. There is a very low risk to Harry throughout this, so I hope it all goes well for him.
This morning I vomited. It is really peculiar, because I did not feel nauseous until right before it happened, and then I just knew it would happen. I have stopped taking the anti-sickness meds - perhaps this was a mistake. I will start again this evening.
This afternoon Pete and Sharon came to visit. We sat in the garden and had a very pleasant time, although I was hoping that Pete would be able to solve one of the IQ puzzles that Rose and I cannot do; Pete is cleverer than me:) - we were at school together so I should know! Sadly he failed, but he has taken a copy of the puzzle; I have high hopes.
We have opened a bottle of 1998 Vieux Telegraphe, a Chateauneuf du Pape wine from the Rhone region of France. It is another lovely, rich, powerful wine; as Rose put it, "a wine to drink and put the world to rights to". We will dine outside - it is a very pleasant English Spring evening.
Tomorrow I will check in to Ambicare, and have a new PICC line inserted. The chemo starts on Thursday. I will spend 6 days in Ambicare, and then be admitted to hospital one day before the transplant. Meanwhile, my brother Harry starts his course of injections to stimulate his stem cell growth on Sunday; one per day until next Thursday, the day of the transplant. Then he comes to UCH for the stem cell harvest, and the cells will be given to me as soon as they have them. I very much hope we will see each other on the day; if I am well enough I can visit him whilst the cells are being harvested, and after he has finished he can come and see me in hospital. There is a very low risk to Harry throughout this, so I hope it all goes well for him.
This morning I vomited. It is really peculiar, because I did not feel nauseous until right before it happened, and then I just knew it would happen. I have stopped taking the anti-sickness meds - perhaps this was a mistake. I will start again this evening.
This afternoon Pete and Sharon came to visit. We sat in the garden and had a very pleasant time, although I was hoping that Pete would be able to solve one of the IQ puzzles that Rose and I cannot do; Pete is cleverer than me:) - we were at school together so I should know! Sadly he failed, but he has taken a copy of the puzzle; I have high hopes.
Monday 13 June 2011
Tempus fugit
It is Monday. On Wednesday I go back to hospital to begin the last leg of treatment. The time has flown by, largely with me doing nothing! I have read some, watched TV, and generally relaxed before the upcoming travails. It is a strange kind of work though; I am just passively receiving whatever ... treatment, illness, and so on. Still, it is the hardest work I have ever done, but maybe that says more about my life prior to leukaemia!
I am feeling reasonably well. Rather disconcertingly I hear my blood pulsing in my ears most of the time, even when my pulse is calm. I am not sure why this is. I managed to tip the scales at 84.6kg which is 186lb or 13st 4lb; some progress at last. The nausea has more or less departed, and my appetite is good.
It was nice to see Murray win Queens. Tsonga played really well, but somehow Murray was too much. Anything less than the semis at Wimbledon will surely be a disappointment now. I wonder how much of Wimbledon I will get to see ...
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I am feeling reasonably well. Rather disconcertingly I hear my blood pulsing in my ears most of the time, even when my pulse is calm. I am not sure why this is. I managed to tip the scales at 84.6kg which is 186lb or 13st 4lb; some progress at last. The nausea has more or less departed, and my appetite is good.
It was nice to see Murray win Queens. Tsonga played really well, but somehow Murray was too much. Anything less than the semis at Wimbledon will surely be a disappointment now. I wonder how much of Wimbledon I will get to see ...
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Sunday 12 June 2011
Afternoon tea
Yesterday we had a bottle of 1999 Chateau Talbot with dinner. It was absolutely gorgeous, perfectly ready to drink at 12 years after the vintage. It is a St Julien 4th growth, and had classic Bordeaux notes of coffee, tobacco and ripe black fruits.
Today it has been raining all day, so the tennis was washed out till tomorrow. But instead, we had an afternoon tea party! Paul, Raksha, Marilyn and Kim came round for tea and a chat. Rose made Irish tea cake and scones, and we had a jolly good chin-wag! They left a short while ago. It was really nice to see them; I was feeling a bit down this morning, but now I feel much better.
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Today it has been raining all day, so the tennis was washed out till tomorrow. But instead, we had an afternoon tea party! Paul, Raksha, Marilyn and Kim came round for tea and a chat. Rose made Irish tea cake and scones, and we had a jolly good chin-wag! They left a short while ago. It was really nice to see them; I was feeling a bit down this morning, but now I feel much better.
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Saturday 11 June 2011
A trip to the shops
Yesterday was pretty uneventful, so I did not post. Rose played golf in the afternoon and we had fish and chips for supper.
This morning we walked to the shopping centre to get a few things. It was nice for me to get some exercise, and I felt OK. This afternoon our friend Steve rang from Cornwall, which was great. Then we watched Murray give a tennis lesson to Roddick, and sadly Tsonga beat our other Brit James Ward. Let's hope the weather holds for the final tomorrow.
Although I am eating what seems to be a great amount, I am only managing to maintain my weight at 84kg. I really would like to put on another couple of kilos, but it is proving to be impossible.
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This morning we walked to the shopping centre to get a few things. It was nice for me to get some exercise, and I felt OK. This afternoon our friend Steve rang from Cornwall, which was great. Then we watched Murray give a tennis lesson to Roddick, and sadly Tsonga beat our other Brit James Ward. Let's hope the weather holds for the final tomorrow.
Although I am eating what seems to be a great amount, I am only managing to maintain my weight at 84kg. I really would like to put on another couple of kilos, but it is proving to be impossible.
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Thursday 9 June 2011
Taking it easy
I did not sleep as well last night, but I suppose well enough.
The wine did not disappoint last night! It is a great accompaniment to salmon.
Today, Rose was playing golf for her ladies scratch team, so I have been alone most of the day. I did a few small chores, and went to the chippy for lunch. Rose won her match 6 and 5, and the team also won, so well done Rose. I just watched Andy Murray go through to the next round at Queens, so overall a good day.
The nausea has definitely abated, I just have a slight distortion of taste left over. I feel better than I have felt for a while. I hope to go into the transplant as strong as I can be.
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The wine did not disappoint last night! It is a great accompaniment to salmon.
Today, Rose was playing golf for her ladies scratch team, so I have been alone most of the day. I did a few small chores, and went to the chippy for lunch. Rose won her match 6 and 5, and the team also won, so well done Rose. I just watched Andy Murray go through to the next round at Queens, so overall a good day.
The nausea has definitely abated, I just have a slight distortion of taste left over. I feel better than I have felt for a while. I hope to go into the transplant as strong as I can be.
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Wednesday 8 June 2011
2000 Corton Grand Cru - Tollot Beaut
Since I finished withe antibiotics yesterday, I have felt better today; less nauseous. Also, I can have a drink again, so we decided to open a good bottle of wine, as named in the title of this post. We have just tasted it! And the wine is utterly delightful; I am looking forward to drinking a glass or two with dinner.
I hope you like my new hairdo!
The rest of the day has been uneventful, except for the sighting of a hedgehog in our garden. They are getting rarer apparently, so it Is nice to see one.
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I hope you like my new hairdo!
The rest of the day has been uneventful, except for the sighting of a hedgehog in our garden. They are getting rarer apparently, so it Is nice to see one.
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Tuesday 7 June 2011
Nuclear medicine
Today we went to UCH for two tests using radioactive material at the department of nuclear medicine; a kidney function test and a cardiac function test. It was a long day!
The first thing they tried to do was insert a cannula, but my veins are so well hidden it took several attempts. Eventually we got one inserted, for the purpose of administering the radioactive stuff for the kidney test. You have to come back after 2 hours, and then at hourly intervals, and at each return they take a blood sample. But they had to take the blood from the other arm!! So, another cannula was inserted, this time by a doctor. I have well and truly been stabbed today!
For the first 2 hour break we went for a walk to Russell Square, to the post office. We came back via Pret's for lunch (I had soup). The rest of the time we spent waiting in the hospital, rather successfully doing a crossword.
The second test (heart function), involves being injected with more radioactive stuff, and then lying still inside a scanning machine for 10 minutes with your left arm stretched out above your head (so the machine gets a good look at you heart). It doesn't sound much, but I could not feel my left arm when it was finished.
We were finished at about 3:30, and home by 5. We left home at 8:45am, so it has been a full day, and for Rose, of basically sitting in waiting areas. I am so grateful she was with me.
Last night for dinner we had a potato pie that was really delicious. The recipe comes from Yotam Ottolenghi's book called "Plenty".
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The first thing they tried to do was insert a cannula, but my veins are so well hidden it took several attempts. Eventually we got one inserted, for the purpose of administering the radioactive stuff for the kidney test. You have to come back after 2 hours, and then at hourly intervals, and at each return they take a blood sample. But they had to take the blood from the other arm!! So, another cannula was inserted, this time by a doctor. I have well and truly been stabbed today!
For the first 2 hour break we went for a walk to Russell Square, to the post office. We came back via Pret's for lunch (I had soup). The rest of the time we spent waiting in the hospital, rather successfully doing a crossword.
The second test (heart function), involves being injected with more radioactive stuff, and then lying still inside a scanning machine for 10 minutes with your left arm stretched out above your head (so the machine gets a good look at you heart). It doesn't sound much, but I could not feel my left arm when it was finished.
We were finished at about 3:30, and home by 5. We left home at 8:45am, so it has been a full day, and for Rose, of basically sitting in waiting areas. I am so grateful she was with me.
Last night for dinner we had a potato pie that was really delicious. The recipe comes from Yotam Ottolenghi's book called "Plenty".
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Monday 6 June 2011
Dental checkup
Today we went back to UCH for a dental checkup after the extraction two weeks ago. The two weeks ave flown by it seems, I guess because they have been quite eventful, as recorded in this blog.
Before seeing the dentist, I had to go to the bone marrow transplant (BMT) clinic to give some more blood samples that they did not take last time. But the nurses there could not find a vein! The veins in my arms have all but shut down, and after 4 attempts they gave up; I had to get an experienced phlebotomist to take the blood (which she did rather easily).
The dental checkup was fine. The soluble suture has not yet dissolved, but it hurt too much when she tried to remove it manually, so it can dissolve at its own pace!
On the way home we stopped off to pick up Rose's new reading glasses, and finally got home just before 2pm.
My nausea is still pretty bad, stealing my appetite and washing the colour out of life. I am now drinking 2 or 3 of the high calorie drinks to try and keep my weight. I only have one more day on the antibiotics, which might be exacerbating the nausea, so I am hopeful for some improvement in the nausea on Wednesday. We shall see ...
Before seeing the dentist, I had to go to the bone marrow transplant (BMT) clinic to give some more blood samples that they did not take last time. But the nurses there could not find a vein! The veins in my arms have all but shut down, and after 4 attempts they gave up; I had to get an experienced phlebotomist to take the blood (which she did rather easily).
The dental checkup was fine. The soluble suture has not yet dissolved, but it hurt too much when she tried to remove it manually, so it can dissolve at its own pace!
On the way home we stopped off to pick up Rose's new reading glasses, and finally got home just before 2pm.
My nausea is still pretty bad, stealing my appetite and washing the colour out of life. I am now drinking 2 or 3 of the high calorie drinks to try and keep my weight. I only have one more day on the antibiotics, which might be exacerbating the nausea, so I am hopeful for some improvement in the nausea on Wednesday. We shall see ...
Sunday 5 June 2011
Yet another lazy Sunday
This morning Chris and Harriet popped round for a visit, which was very nice, especially as Rose has not seen them for a while.
There is not much change in my condition; still nauseous, but the diarrhoea has alleviated somewhat.
Rose cooked scones, and we had some with clotted cream and strawberry jam. Even my nausea could not prevent me enjoying them.
I am currently watching the tennis; it looks like Nadal has the match in his pocket.
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There is not much change in my condition; still nauseous, but the diarrhoea has alleviated somewhat.
Rose cooked scones, and we had some with clotted cream and strawberry jam. Even my nausea could not prevent me enjoying them.
I am currently watching the tennis; it looks like Nadal has the match in his pocket.
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Saturday 4 June 2011
Continuing nausea
This morning I took the stool sample to my local hospital, who also took blood for a blood count. The phlebotomist was clumsy, and I have a bruised inner elbow. Then I went into town to pick up my prescription for high calorie drinks. These are little 125mm drinks that contain 300 calories, and can be used to supplement the diet.
My diarrhea is better today (not so frequent) but the nausea has returned quite strongly (I feel sick as I write). I am trying out a patch that you stick on behind your ear. Each patch lasts 72 hours. So far, I am not impressed! I think the cocktail of pills was better. Looks like I spoke too soon when I thought the nausea was wearing off after the last chemo. I have had two of the high calorie drinks today. Meanwhile, Rose continues to cook delicious meals that I am unable to enjoy, which is very frustrating. I appreciate very much the care she takes and the effort she makes.
Li Na did well to win Roland Garros. I wanted Schiavone to win, but she just wasn't good enough. She had to rely on Li choking (like in Melbourne). I am looking forward to Federer and Nadal ...
My diarrhea is better today (not so frequent) but the nausea has returned quite strongly (I feel sick as I write). I am trying out a patch that you stick on behind your ear. Each patch lasts 72 hours. So far, I am not impressed! I think the cocktail of pills was better. Looks like I spoke too soon when I thought the nausea was wearing off after the last chemo. I have had two of the high calorie drinks today. Meanwhile, Rose continues to cook delicious meals that I am unable to enjoy, which is very frustrating. I appreciate very much the care she takes and the effort she makes.
Li Na did well to win Roland Garros. I wanted Schiavone to win, but she just wasn't good enough. She had to rely on Li choking (like in Melbourne). I am looking forward to Federer and Nadal ...
Friday 3 June 2011
I walk a rocky road
I have diarrhea. The antibiotics I am taking for the PICC line infection are probably the cause. I have been asked to take a stool sample. Those of you who have already done this know it is unpleasant at the best of times. Still, we need to know if I have the C-Diff bug, because if I do not I can at least take medication to alleviate the diarrhea. I will take the sample to my local hospital's pathology lab tomorrow morning. On the plus side, my haemorrhoid has gone away, so at least I don't have a double wammy!
So far, the diarrhea has not affected my general health, and I feel OK. Even the nausea seems to be abating a little bit - it is two weeks since my last dose of chemo so maybe it is just naturally going away. I am scaling back on my anti -sickness drugs to check this hypothesis ...
The weather has been beautiful here today, if a little breezy. So apart from the diarrhea it has been a pleasant day.
Shame Murray got beaten by Nadal, but Nadal was simply too good.
So far, the diarrhea has not affected my general health, and I feel OK. Even the nausea seems to be abating a little bit - it is two weeks since my last dose of chemo so maybe it is just naturally going away. I am scaling back on my anti -sickness drugs to check this hypothesis ...
The weather has been beautiful here today, if a little breezy. So apart from the diarrhea it has been a pleasant day.
Shame Murray got beaten by Nadal, but Nadal was simply too good.
Thursday 2 June 2011
Meeting the transplant team
Today Rose and I went to the hospital to meet the transplant team. I also had another bone marrow biopsy.
The transplant will be a "reduced intensity" regime; the alternative being "high intensity". The difference is that the high intensity kills all the immune system in the host, before the donor cells are infused. With low intensity, the host immune system is suppressed, but would recover if left long enough. The theory behind the reduced intensity approach is that the donor white cells will kill off any remaining host stem cells. The risks of a relapse with high intensity treatment is lower, but the risk of death during the transplant phase increases with age. If I were 30 instead of 50, I would probably have the high intensity treatment.
The pre-transplant chemo (called conditioning) is done in Ambicare. The day before the transplant I will be admitted, and the transplant infused (there is no operation - it is just the stem cells that were harvested from my brother that are infused IV the same as any other blood product). There then follows a few weeks in hospital where I will have no immune system. Infections are certain in a similar way to the first two cycles of chemo. During this time I will be hooked up to IV drips 24/7. In particular I get cyclosporin, which suppresses the lymphocytes of of the donor cells (the anti-viral agents), so that I do not get "graft versus host disease" (GVHD) too badly. After a couple of weeks they expect the donor cells to engraft, and my counts will return, but I stay on the cyclosporin. Once my counts recover (the donor cells engraft), they try and wean me off IV to oral medication so that I can go home. During this whole period I will inevitably get an infection; they say 1 in 3 patients spend some time in intensive care (something I have avoided so far).
After being sent home, the first 3 months are pretty bad. I will be weak, and maybe unable to get up on some days. I will visit a clinic once a week, and the hospital send transport to get me. The levels of cyclosporin are gradually reduced (giving me the ability to fight viral infection), and some GVHD is expected, even desired, as it will kill any remaining leukemic cells. The next 3 months should see me gradually regaining strength, and so clinic visits are only bi-weekly (and the hospital will not send transport anymore as they deem public transport to be safe). During this time it is not uncommon to be readmitted to hospital to treat some viral infection.
There are not very good mass test figures to derive outcome probabilities, but broadly I have a 85 - 90% chance of surviving the transplant and the subsequent weeks in hospital, and a 40% chance of surviving 5 years after. This chance increases after 18 months - i.e. most relapses happen within 18 months of transplant.
The transplant will be a "reduced intensity" regime; the alternative being "high intensity". The difference is that the high intensity kills all the immune system in the host, before the donor cells are infused. With low intensity, the host immune system is suppressed, but would recover if left long enough. The theory behind the reduced intensity approach is that the donor white cells will kill off any remaining host stem cells. The risks of a relapse with high intensity treatment is lower, but the risk of death during the transplant phase increases with age. If I were 30 instead of 50, I would probably have the high intensity treatment.
The pre-transplant chemo (called conditioning) is done in Ambicare. The day before the transplant I will be admitted, and the transplant infused (there is no operation - it is just the stem cells that were harvested from my brother that are infused IV the same as any other blood product). There then follows a few weeks in hospital where I will have no immune system. Infections are certain in a similar way to the first two cycles of chemo. During this time I will be hooked up to IV drips 24/7. In particular I get cyclosporin, which suppresses the lymphocytes of of the donor cells (the anti-viral agents), so that I do not get "graft versus host disease" (GVHD) too badly. After a couple of weeks they expect the donor cells to engraft, and my counts will return, but I stay on the cyclosporin. Once my counts recover (the donor cells engraft), they try and wean me off IV to oral medication so that I can go home. During this whole period I will inevitably get an infection; they say 1 in 3 patients spend some time in intensive care (something I have avoided so far).
After being sent home, the first 3 months are pretty bad. I will be weak, and maybe unable to get up on some days. I will visit a clinic once a week, and the hospital send transport to get me. The levels of cyclosporin are gradually reduced (giving me the ability to fight viral infection), and some GVHD is expected, even desired, as it will kill any remaining leukemic cells. The next 3 months should see me gradually regaining strength, and so clinic visits are only bi-weekly (and the hospital will not send transport anymore as they deem public transport to be safe). During this time it is not uncommon to be readmitted to hospital to treat some viral infection.
There are not very good mass test figures to derive outcome probabilities, but broadly I have a 85 - 90% chance of surviving the transplant and the subsequent weeks in hospital, and a 40% chance of surviving 5 years after. This chance increases after 18 months - i.e. most relapses happen within 18 months of transplant.
Wednesday 1 June 2011
PICC line infection
Yesterday was uneventful up until the evening, so I did not post an entry here. However, it all changed and I wound up having an interesting evening.
At about 6pm I noticed that the PICC line entry site looked a bit yukky - not nice and clean as it normally does (it is covered by a see-through gel dressing). I rang the haematology help line at UCH, and they asked my to get doctor to look at it, and call them back. I contacted my local out-of-hours service, and got an appointment for 7:30pm. The doctor confirmed it was pus that had discharged, and he spoke with the on-call haematology registrar at UCH. They told me that I had to come to UCH right away, have the PICC line removed, and give blood samples and swabs from the site and the PICC tip. It is now about 8pm.
Rather than go all the way to UCH, I asked if my local A&E department could do what is necessary, and the UCH team agreed. This was great because I was already at the hospital (it is where the out-of-hours service is located). I was given the name of the nurse who would perform the PICC removal (it is a simple procedure), and I went across to A&E. Even though there were quite a few people waiting, I was ushered through right away/ And even though the nurse confessed she had never done it before, she seemed very competent and indeed it all went smoothly. I got home before 10pm; it would have been a much later night if I had gone to UCH. I have been given a course of antibiotics to take for 7 days.
I hope that they will insert a new PICC line prior to the transplant treatment which begins in two weeks time. It is dependent on whether the infection clears up I guess, which it should do. Luckily I do not have any other symptoms of a serious infection - I hope it was just the entry site that was affected. Time will tell I guess.
At about 6pm I noticed that the PICC line entry site looked a bit yukky - not nice and clean as it normally does (it is covered by a see-through gel dressing). I rang the haematology help line at UCH, and they asked my to get doctor to look at it, and call them back. I contacted my local out-of-hours service, and got an appointment for 7:30pm. The doctor confirmed it was pus that had discharged, and he spoke with the on-call haematology registrar at UCH. They told me that I had to come to UCH right away, have the PICC line removed, and give blood samples and swabs from the site and the PICC tip. It is now about 8pm.
Rather than go all the way to UCH, I asked if my local A&E department could do what is necessary, and the UCH team agreed. This was great because I was already at the hospital (it is where the out-of-hours service is located). I was given the name of the nurse who would perform the PICC removal (it is a simple procedure), and I went across to A&E. Even though there were quite a few people waiting, I was ushered through right away/ And even though the nurse confessed she had never done it before, she seemed very competent and indeed it all went smoothly. I got home before 10pm; it would have been a much later night if I had gone to UCH. I have been given a course of antibiotics to take for 7 days.
I hope that they will insert a new PICC line prior to the transplant treatment which begins in two weeks time. It is dependent on whether the infection clears up I guess, which it should do. Luckily I do not have any other symptoms of a serious infection - I hope it was just the entry site that was affected. Time will tell I guess.
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